Lynch syndrome research could prevent cancer deaths

Cancer isn’t the first hardship dealt to Carrie Grindle-Lyons. In 2008, she delivered a baby boy at 22 weeks. He was stillborn.

Her doctor asked her not to try getting pregnant again right away because she had fibroids in her uterus. They were removed with surgery that left her uterus in place. A year after she lost her baby, Carrie went in for a checkup. What doctors found devastated her.

“The fibroids grew back, and they found out I had endometrial cancer,” she says.

She went to Huntsman Cancer Institute (HCI) for treatment and ended up having a hysterectomy. She beat the cancer, but her doctors warned she wasn’t in the clear. They explained her type of cancer could indicate Lynch syndrome, an inherited disorder that increases the risk for colon and other cancers.

“They said I needed to go in every year for colonoscopies. It's the measurement stick for finding out if you have colon cancer,” she says. And she did, for a few years. Then life happened—Carrie and her husband adopted a baby girl. A few years went by before she realized she hadn’t had a recent colonoscopy. Doctors found a polyp that tested positive for colon cancer at her next colonoscopy.

“We went through all the options. They said ‘it's early, it's stage one, thank goodness, but we need to remove part of your colon,’” she says. After the surgery, she began her recovery, with a toddler at home. Carrie explains, “It was about just moving ahead and getting back into the game of life as fast as I could, because I knew that she wasn't going to slow down.”

Carrie says she’s thankful she knew about Lynch syndrome, because it gave her a chance to catch her cancer early. Jewel Samadder, MD, studies Lynch syndrome at HCI, looking for ways to diagnose colon cancers earlier.

“If you have Lynch syndrome, inherited from either your mom or your dad, you have up to an 80% risk of developing colon cancer in your lifetime,” Dr. Samadder says. “You also have up to a 50% risk of developing uterus or endometrial cancer in your lifetime.

Dr. Samadder says the medical community needs to look at prevention, not just treatment, of cancer. Recognizing Lynch syndrome is a key component in reducing risk among an estimated one million people in the U.S.

Finding people who have Lynch syndrome will do more than just inform them of risk. “More importantly, we have ways to prevent those cancers,” he says. Colonoscopies, prophylactic surgeries, mammograms, or hysterectomies can almost completely reduce their chances of ever having cancer.”

Samadder is not alone in his enthusiasm for finding Lynch syndrome. The Blue Ribbon Panel of scientists on Vice President Joe Biden’s Moonshot Initiative have recommended a nationwide demonstration program for Lynch syndrome. Their 2016 draft report says people with Lynch syndrome are “an important target population for cancer prevention and early detection….”

Carrie says she’s thrilled that Lynch syndrome could become more well-known and more widely diagnosed. She says her early diagnoses probably saved her life. “I just know I'm thankful for those diagnoses being found when they were, because I have a life to live.”

Huntsman Cancer Institute (HCI) is a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center, which means it meets the highest standards for cancer research and receives support for its scientific endeavors. HCI is located on the campus of the University of Utah in Salt Lake City and is a part of the University of Utah Health Care system. HCI treats patients with all forms of cancer and operates several high-risk clinics that focus on melanoma and breast, colon, and pancreas cancers, among others. HCI also provides academic and clinical training for future physicians and researchers. For more information about HCI, please visit www.huntsmancancer.org.